Whoever participates in this will get a very big feather in their cap.
Monday, February 25, 2013
"Hanging Fire" – Dr. John Chia
I remember well the ME/CFS researcher Jonathan Kerr. Many people might not remember that he wrote a paper on enteroviral involvement in ME/CFS, a copy of which can be found here.
“The role of enterovirus infection as a trigger and perpetuating factor in CFS/ME has been recognized for decades.”
Soon after this, Jonathan Kerr "was disappeared" from ME/CFS research. I wonder where he is? I miss his efforts on our behalf. The more I think about his departure, the sadder I get. In the last few years we have lost a number of serious ME/CFS researchers. These losses have been distressing.
On a less disturbing note, we might put forth the idea that ME/CFS research has never been so broad and far-ranging as it is today. Some would say that we are making progress, and that hope stands right around the corner (probably leaning against a wall, whistling - or smoking a cigarette).
In this world of optimism, one astonishing item continues to be set aside or ignored: the enteroviral association with ME/CFS established by Dr. John Chia. Something needs to be done about this. Dr. John Chia's critical work should be put center stage. Dr. Chia holds in his hand a key to unlock a part of this illness.
Recently there has been a fine set of video interviews with this unsung hero of ME/CFS. Part one can be seen here with the others following. These interviews are conducted by Llewellyn King, who speaks with a knowledge and ease that is admirable. Llewellyn King’s series ME/CFSAlert has focused on many clinicians and researchers. However, this four-part interview with Dr. John Chia is the best. It is worth viewing these videos more than once - for the key points to sink in.
Ten years ago, Dr. Chia’s son Andrew became sick with what turned out to be ME/CFS. In his desire to help his son, Dr. Chia did what many smart people do - he turned to the past (history) - and studied the early literature of ME. Things fell into place for Dr. Chia as he reviewed the older, known connection of ME/CFS to enteroviruses. Enteroviruses fit the picture.
Early clinicians in the field, especially Ramsey and Richardson, suspected enteroviral involvement. This belief held particularly true in the UK, where the disease is known by its proper name - Myalgic Encephalomyelitis (ME).
If one wants to get a real fright about the seriousness of this illness and what enteroviruses can do in the human body, read John Richardson’s “Enteroviral Medicated EncephalomyelitisSyndrome Pathologies”.
In time, the pursuit of an enteroviral association with ME/CFS lapsed. There are several reasons for this.
In 2007 Dr. Chia and his son Andrew Chia reignited this enteroviral idea and published a paper demonstrating a strong association of enteroviruses in ME/CFS. The surprising and convincing aspect of their study was that they were looking at real human tissue – stomach biopsies. This is hardly ever done in ME/CFS research.
As a researcher/clinician, Dr. Chia has constructed a world of his own. He has gathered his profound insights through making no great new discovery. He has just connected the dots. His studies are the product of persistent, dogged effort. As he says, his work is not sexy. Dr. Chia and his son continue to build research into enteroviral involvement in ME/CFS.
Since his paper was published in 2007, no one has tried to substantiate or replicate his work. Why? How can his be?
Dr. Chia has left “something of significance” for us sitting on the table in plain view. To get further with this it needs to be taken up by someone else. No thinking is involved. All it needs is the hard work of replication.
(InvestinME has done a great service in elevating Dr. Chia’s research. They invite him to speak each year. Unfortunately, his research efforts are at a standstill with his ideas gaining no traction. What is Dr. Chia supposed to do – replicate his own study?)
Anyone familiar with the research world of ME knows the implications of nailing down one corner of the illness through substantiating an association with an infectious agent. Let me repeat that: if you nail down one corner of this illness with an infectious agent, you nail down the whole thing.
Instead, everyone wants to go in their own direction and solve this illness on their own. Is that the idea? - Everyone comes up with their own idea that will never be substantiated? Is this how real science is done today? Does the ME/CFS research world have to be that constricted?
Why doesn’t the Whittemore Peterson Institute (WPI), Mt Sinai ME/CFS Center, Ben Natelson, Peterson’s Simarron Research Foundation, Klimas’ Nova Institute for Neuroimmune Medicine, the Chronic Fatigue Initiative, Kolgenick’s Open Medicine, Jose Montoya at Stanford, or the CAA, step up to the plate and substantiate Dr. Chia's work?
The most likely person to pursue the enteroviral connection in ME/CFS is Ian Lipkin at Columbia. Lipkin has an inquisitive nature. I would be surprised if he is doing tissue biopsies, which seems the way to go.
It is time for someone to make a serious effort to replicate Dr. Chia’s work - and to find out what exactly it means.
Nothing would get the government agencies or the drug companies interested faster than scientifically demonstrating a viral association to ME/CFS.
You can petition the government as long as you want but nothing will change until the science is built in a coherent fashion. Giving them a replicated study of Dr. John Chia’s work would be a very good first step. It would put a sudden halt to the research merry-go-round of the last twenty-five years.
Whoever participates in this will get a very big feather in their cap.
Whoever participates in this will get a very big feather in their cap.
Labels: Andrew Chia, Coxsackie B, Dr John Chia, enterovirus, InvestinME, John Richardson, Llewellyn King, ME/CFS, ME/CFS Alelrt, Melvyn Ramsey, Myalgic Encephalomyeletis
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Thank you for this post.ReplyDelete
I'm a patient of Dr Chia's and I can speak from experience that he is a ferocious supporter of patients. He's also a very humble man, uninterested in fame or fortune. What he is interested in is making us well. Not better, well.
Enteroviral research isn't 'sexy' science. What they are and what they do to the body is a known quantity, therefore unlikely to garner headlines, grants or accolades.
Perhaps this may the reason no one is following up?
Thank you for this post. I am new to the CFS/ME monster (2009). I am a patient myself and learning about this disease is exhausting and frustrating when there is so much info to wade through. Thank you for being a patient advocate. We need healthies to help us. I'm sorry your daughter has this, I really am. I lost my community college teaching career because of this disease.ReplyDelete
Thank you for this insightful post, Patient Advocate. I agree with you. Replicating Dr. Chia's work with enteroviruses would be the next logical step. What can patients do to encourage Dr. Lipkin or one of the other researchers to do this?ReplyDelete
Yes, Tissue samples are going to be the ONLY way to go to get anything even vaguely resembling accurate negatives.ReplyDelete
The window for accurate blood testing for enteros (including polio) is only about 6 weeks, after which the buggers scarper off into tissues of all sorts. If a person shows high titers in blood after protracted illness it means that their viral counts are staggeringly high.
This is a known, in the literature, trait of enteroviruses. Why physicians and researchers continue to test for them via blood in longterm patient populations baffles me. Could it be they've forgotten to teach this little tidbit with the eradication of polio in the Western world?
A researcher who shall rename nameless here once told me (after discovering I had Coxsackie B) that it didn't matter because there was nothing you could do for it - that is, there is no approved drug or drug in the FDA pipeline for these viruses. Really.ReplyDelete
Here is a paper from 1990 in which Dr. A. Melvin Ramsay and others propose that enteroviral infection is a cause of myalgic encephalomyelitis.ReplyDelete
"Clinical, laboratory, and epidemiological data support the suggestion that ME is a complication in non-immune individuals of widespread subclinical NPEV [non-polio enterovirus] infection."
Thanks PA - articulate and insightful, as ever.ReplyDelete
Totally agree about the logic of Lipkin and others studying tissue samples. I'd like other tissues investigated as well, especially muscle. Baffling why this has been so overlooked.
Equally baffling is why, over and over, the really good leads don't get followed up. How is it possible that Rituximab replication study under way? Etc etc
I wonder if the upcoming FDA Stakeholder's meeting is a good place to bring this up.ReplyDelete
The reason there is no follow up on good leads is that CFS researchers are not really different than the CDC.ReplyDelete
They think up whatever they want, and exclude anything that doesn't fit their theory.
Take the inception of CFS, for example.
Dr Cheney and Dr Peterson were alarmed at a cluster of teachers at our high school. This didn't sound anything like CEBV Syndrome, and called the CDC for help. Which is why Kaplan and Holmes came out to Tahoe.
But once Dr Cheney decided the cause must be a virus, this was the signal to STOP looking for anything else. Page 49 of Osler's Web describes how two of the teachers tried to bypass Cheney's disinterest, and ask Gary Holmes directly to look into whatever was in the teachers lounge that made us so sick.
Gary Holmes didn't believe it, any more than Cheney or Peterson did.
We can't even get research into the incident that started the whole ball rolling.
That is why CFS is such a pathetic shambles.
You would think there would be questions.
But there never are. People have already made up their minds about us.
Osler's Web; Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic
by Hillary Johnson
"Foot Soldiers From Atlanta"
Truckee High teachers Gerald and Janice Kennedy met Holmes, but Gerald Kennedy confirmed, "It wasn't by his request --- it was by ours."
Upon arriving for an appointment with Peterson, they learned from the doctors staff that a federal investigator was on the premises. Gerald Kennedy,
by now convinced that he, Janice, and their Truckee High colleagues had been victims of an environmentally transmitted disease, sought a meeting
Apparently Holmes was agreeable. "We went into the examining room and asked him some questions," Kennedy said. High among the teachers concerns was the possibility that fumes from the ditto machine toner --- which, after all, was packaged in a can decorated with skull and crossbones --- had made the teachers ill.
Another culprit proposed by Kennedy was the encrusted, infrequently changed air filters in the room's heating system.
Could they have allowed a viral agent to infect the teachers?
"I remember telling him about the filters," Kennedy said. "You could tell he thought we were a bunch of loonies, That was early into it, and we were still thinking, Well, maybe we ARE crazy. But you would think that we would be questioned, at least, and there weren't a lot of questions. He just nodded his head and said, "Uh-huh, uh-huh.'' Very little information was exchanged." By his countenance of indifference, Holmes communicated his bias to the Kennedys: "He seemed to have already made up his mind about us."
By their utter, total, complete lack of interest, refusal to respond, prevarication. negation and obfuscation, so called "CFS researchers" seemed to have made up their minds about us.ReplyDelete
So much so, that they intend to make damn sure of it by never checking.
Hey, Thanks for such an informative post. I was actually googling Coxsackie B4 yesterday and came across your posts on Drs Chia and Richardson. I was familiar with Chia but not Richardson. I was diagnosed with ME by cons. neurologist Prof Behan - then Doctor - in late 1983 after contracting Coxsackie B4 in west of Scotland in 1982. Virologist Dr Eleanor Bell was also doing research into CBVs at this time (she is referenced in a 2002 BMJ obituary of Dr Richardson). My blog post is here if you are interested, and I have also linked to your blog: http://velo-gubbed-legs.blogspot.co.uk/2013/03/a-wee-girl-that-breaks-my-heart.htmlReplyDelete
I asked Gerald Kennedy, "With all this confusion about CFS, has anyone called you up to ASK any questions.... find out about your experience... what the illness is like?"ReplyDelete
He said "No, no one has"
I then called up a few of the others and asked the same thing, and got the same reply.
So it's not just me, and nothing to do with "Eriks attitude".
(That's just a lame excuse that people make up.)
No.. it's quite true.
There are no questions, no attempt to find out anything from a firsthand source, and not a single CFS researcher cares if whatever they are studying has anything at all to do with this incident.
I thought y'all would want to know.
But I guess nobody even cares about much of anything at all, so long as they think their version of CFS might be investigated, someday.
Although if nobody cares about the first CFS, why would anyone care about the millions of variations on a theme?
It never once crossed my mind that people would write about us, cite this incident as important, and then absolutely refuse to ever discuss it or research it.ReplyDelete
CFS researchers are the worst criminals and villains on Earth.
The Ultimate hypocrites.
Complete agree with the statement: "Let me repeat that: if you nail down one corner of this illness with an infectious agent, you nail down the whole thing".ReplyDelete
In basic "data modeling", there is this "many-to-many" relationship. We see several of these disease that have many of these sypmtoms. CFS/ME, Fibromyalgia, Lupus, MS, and a bunch of other weird diseases have a lot of overlapping symptoms. And with all of these symptoms, there are a number of case studies and publications that tell us how latently-established viruses can cause specific ailments. E.g. Herpes Simplex can infect ALL tissues: blood vessels, organs, glands, etc. Moreover, there are studies that follow patients who showcased dysfunction related to primary infection, e.g. gut dysmotility (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1027866/?page=2).
Additionally, there are research cases that establish causation of involuntary muscles in rats that become dysfunctional following primary infection. (http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0072648).
Outside of these examples of Gastro-intestinal infection, there are numerous scientific claims about infection of liver, kidney, adrenal gland, thyroid, etc. But, we don't see the effects of these infections by Herpes Simplex. This is where high suspicion comes in. Let's suppose persistent infection of various organs and glands leads to chronic inflammation. Wouldn't there be a chance of dysfunction? And if there is dysfunction of these glands and organs, what physiological effects would patients experience? Also, given that Herpes Simplex has been proven to disrupt involuntary muscles within the gut, couldn't the same happen with the other glands and organs, but without the classic presentation of the virus (legions and blisters)???
The problem is, there is no "one" single viral cause of ME/CFS as ME and CFS are two very different things. ME has always been associated with enteroviruses and this dates back to the largest outbreak on record in 1932. It is how M.E. got it's name in 1956 and it'obtained it's WHO classification in 1969 - it was very well researched and studied back then.CFS on the other hand has hundreds of different causes and of those there are many viral causes such as Epstein Barr virus. It is vital that people understand that there has always only been one viral cause for the real M.E. and that trying to put ME and CFS as the same illness will never help find a cure for the hundreds of different illnesses in the CFS basket.ReplyDelete
If you have a diagnosis of ME or CFS, please visit this website: www.hfme.org . It is the best and most informative website on ME I've ever seen and has helped me tremendously. We must stop to use the wastebasket diagnosis CFS. It is always a misdiagnosis of patients with many different illnesses that happen to have fatigue as one of many symptoms, and patients deserve to get their real diagnosis. Genuine Myalgic Encephalomyelitis on the other hand has always been an acute-onset infectious illness related to Poliomyelitis which occurred in epidemics long before the term CFS was created, and has very distinct symptoms. Doctors like Betty Dowsett and Melvin Ramsay knew what they were talking about (check Ramsay’s criteria). We MUST stop to talk about dozens of fatiguing illnesses as if they were one and the same, we MUST start to enable people to get their right diagnosis, and we MUST accept ME as the distinct neurological infectious disease it once was and not use its name for all kinds of illnesses.ReplyDelete
Other countries are now accepting that diseases are caused by viruses. The FDA needs to wake up.ReplyDelete